The Chronic Diaries: Life Filtered Through Leukemia

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10/1/16 Time Distortion

I was a victim of time distortion. Needlessly, I might add, but victimized nevertheless.

My old nemesis, amperage-interrupting fatigue, has returned, one of the many symptoms of CLL. Some days are better than others, but some days the power just goes out. I had two days like that this week, Tuesday and Thursday. There’s not much I can do about it other than just go off-line when it occurs, as I am a danger to myself and others. Fortunately, I can mostly call olly-olly-ox-in-free when this happens; mostly, but sometimes not.

The ruxolitinib I started a few months ago as part of a clinical trial at Big-as-Texas Cancer Center put a complete hiatus on the fatigue, but whatever was working then has mostly abandoned me now; mostly, but not completely. Two days per week of off-line fatigue is better than seven days a week of off-line fatigue. I am thankful for what improvement is left. I am not complaining. I am trying to relate a funny personal story about an event which the fatigue precipitated.

Last Thursday, I just had to call in the dogs at about 2:00PM. Canaan and I were working preparing for a job next week on the Ole Miss campus (Hotty Toddy, y’all!) and I left him with some things to do as I went to my Oxford retreat, my 1962 Avion camper, a classic piece if there ever was one, and hit the sack after taking my medicine for restless legs.

They used to refer this condition as Restless Lets Syndrome (RLS). In my case, a bad one, they referred to it as Primary Restless Legs Syndrome. Now they are calling Periodic Limb Movement Syndrome, if fifteen second intervals can be called periodic. These interfere with sleep, though they are not physiologically connected in any way to CLL. There is a causation and correlation though, since the more tired I am, the worse the restless legs are. Couple the CLL fatigue with the RLS, and you get the double whammy…the perfect storm of needing to sleep but being unable to.

Oh, I can GO to sleep…I just can’t stay asleep for more than a few minutes until a violent jerk wakes me up, and I mean WIDE awake. The small jerks bring you to a measurable clinically awake status even if they don’t bring you to consciousness, so the sleep you think you’re getting is not restful.

I had taken all the medicine the law allowed, plus a bit more and went to sleep about 3:00PM. I violently awoke at 3:30, having limb movement episodes every six to fifteen seconds. I got up, played on my mandolin a bit, a remnant of mando-mania from the Monroe Mandolin Camp and a welcome respite from the RLS since those determined neurons had something to fire on, got sleepy again, took some more medication, and went back to sleep. The worse the RLS, the less effective the medicine. The more tired you are, the worse the RLS is. It is a vicious cycle, but one that must be endured, since I have no choice but to endure it. Well, there is heroin, but the sleep a heavy narcotic would allow brings with it its own set of unwanted, major, deathly problems. It is best to avoid that route though I have told the nurses, when they ask me, “Mr. Sharp. what do you do for relief when you can’t sleep at all?”

“I usually snort some heroin, take six valiums, drink a pint of whiskey, and presto! . . . I go right to sleep. Works every time,” I reply just to see them gasp and recoil in horror.

“Don’t you dare write that down in my chart,” I say after they have caught their breath enough to pick my chart up off the floor and look real serious at me. “I am just kidding. When I can’t sleep, I reload bullets, practice on some musical instrument, work on a bid or other paperwork, write in my blog, do some leather work, or generally tinker around in my studio. The RLS subsides around 3:30 to 4:30 in the mornings, then I can sleep a bit.” The electronic recordings of several sleep studies show that the RLS recedes on its own in the wee hours of the morning…there is measurable scientific evidence of that.

Three hours of good sleep is my number. It seems to be all I can come up with. But those early morning three hours are filled with dreams: vivid dreams, recurring dreams, recurring vivid dreams, and even vivid recurring dreams, if there is any difference, each of them a window into some trouble, or a glimpse into some foggy wakeful problem wherein the dream offers some solution, or some comfort if no solution, or most likely, some glimpse of a path through heavy thorns and brambles. The path may not be easy, but neither are the thorns and brambles.

I know where these dreams come from. (See 9/11/16 Positive Attitude) You of little faith can laugh at me if you’d like, think me foolish, or think whatever suits you. I am as unmoved as Moses was at those who scoffed at his encounter with the burning bush. You should be so lucky, or unlucky as the case may be, as to see one some time yourself. I expect you’d scoff at the scoffers: a scoffing stand-off as it were. Again, I am unmoved. I am even elated, though they can be burdensome.

My intent here is not to give you a lesson in theology, but to relate how time can get distorted when one sleeps and awakens at odd hours.

Canaan and I had a job to do a hi-potential test of some high-voltage cables that had been installed by an electrical crew at a new Veterans Cemetery that is being built in the tiny hamlet of Kilmichael, Mississippi, nestled between the huge metropoli of Winona and Eupora, Mississippi. Now you may not know where Kilmichael is, but everyone knows where Winona and Eupora are, so no further explanation is necessary. I had promised to be there at 7:00AM sharp to start the tests, which would take about four hours, and the crew of electrical contractor on site would be available to assist us, us being Canaan and me.

On my next attempt to sleep, about 5:00pm, I went completely out, dark out, dead-to-the world out. When I jerked instantly awake, I looked at my watch and saw it was 6:30. My out-ness of sleep had been so deep that I had no idea which 6:30 it happened to be. I opened the blinds and looked out the window. Now, this near the autumnal equinox just passed, it is about the same daylight at 6:30 in the morning as 6:30 in the evening. Though the lean of the shadows did not seem quite right, their misplacement did nothing more than nag me just a bit as I sprang into action.

“Oh my goodness,” I shouted to myself, “I have overslept. I’ll never get to Kilmichael by 7:00.”

I hurriedly packed up all my clothes, packed my mandolin, stowed my computer, and secured the camper. I looked up at the still-light sky and noted the presence of some pretty dark clouds, thinking with dismay that we’d be trying to test the cables in a thunderstorm, a difficult, if not impossible task. I fired up the Tahoe and began to speed down the highway towards Kilmichael, a solid two hours way.

My first call was to Canaan. When he answered, I could hear the clatter of dishes and the clamor of a crowd in the background. “There’s no way I am going to be able to pick you up on time. Just meet me in Kilmichael at 8:30.”

The way I said this did not completely tip him off to my off-ness, but he later told me he thought it a bit perplexing from the way I sounded.

“Where are you?” I asked him, just curious from the background noise.

“I am in a restaurant,” he said.

“OK. I’ll see you at 8:30. Bye!” and hung up the phone, thinking, “Good boy. He is up early enjoying a good breakfast.” While he was no doubt enjoying his meal, it was definitely not breakfast.

My next call was to Sammy, the owner of the contracting company doing the electrical work at the Veteran’s Cemetery. He answered.

“Sammy,” I said, “There’s no way I’m going to get there by 7:00. It’ll likely be 8:30 or so.”

“No problem. My guys start at 6:00AM and will be there all day. Just get with Kenny, my foreman, when you get there,” he replied. Again, there was no indication to him that I had any confusion about what actual time it was. To him I just seemed to be confirming that I was coming and what time he could expect me to be there. though he later admitted wondering why I was calling so late in the evening.

So I am hauling ass down Highway 6 to get to Batesville and intercept I-55 to turn South to head towards Winona. The further West I drove, the darker it seemed to be getting.

“Dang. We are going to have a heck of a storm,” I thought. It was not getting lighter. It was getting darker. A severe approaching storm could be the only answer, I thought to myself, thinking of the dark clouds I saw back in Oxford when the sky was still light.

As I turned South on I-55, the darkness was encroaching and just a bit later was complete. I began to get suspicious. I looked at my watch: almost 8 o’clock. Hmmmm! Something just wasn’t right, but so determined was I, I kept on driving. Was it the apocalypse? Was the sun going to rise? Was Earth as we know it coming to an end? None of these things, though possible, seemed likely. The most likely thing was that I had confused myself. When faced with highly unlikely natural occurrences, such as the Earth’s cessation of rotation, never fail to consider your own likely confusion, first. Start there and then move on to other things.

I finally got so suspicious. I picked up my phone. I looked at the date and time: 8:05PM, Thursday, September 29, 2016. I then reckoned I was not going to be an hour-and-a-half late, but eleven hours early to the job which was to be done on Friday, September 30, 2016. I had not slept through the night, I had only slept for a hour-and-a half. It was not yet tomorrow, it was still today. Of course, it is always today. Even when tomorrow gets here, it will still be today. When you think it’s tomorrow and it’s still today, you can cause yourself some problems, or at least some major inconveniences…though not nearly as many problems as when you think it’s still today and it’s actually tomorrow. I’ll take the former over the latter any day. Today seemed like the day I’d do it. too.

All the starch went out of me. I could not help but laugh at myself. I mean, I even laughed out loud at myself. I then wondered just what I was gong to do. Stop and spend the night in Grenada? In Winona? Schlep all this stuff up to a most likely second-floor motel room? Was I to travel back to my just secured camper and unsecure it only to re-secure it in the morning? It seemed so tedious. Or should I just go on home, after having taken a unusually long scenic route, when there was no scenic to behold in the night-time darkness?

I called Canaan and told him what had happened. He laughed at me, too. “I could tell something was not quite right,” he said, accurately.

I then thought of calling Sammy and decided against it. No need to confuse him further. My memory of our conversation just indicated that I would be there on the job site at 8:30 in the morning. I’d leave it at that.

I called Debbie. “I am on the way home,” I said.

“I thought you weren’t coming until tomorrow, that you were too tired to come home this evening,” she said.

“I got me a good nap. I’m wide awake. I’m headed home,” I replied.

“Well be careful,” she said, adding the usual “I love you” which, knowing it to be true, I still like to hear after 37 years of marriage.

As I write this, after just about three hours sleep last night and vivid dreams this morning, I look outside my windows in my studio. The lumens of the light outside is suspiciously like the light a half-day away though the direction of the rays is not. I am not fooled this time, though. I know what time it is. It is 6:38AM Central Daylight Time, October 1, 2016. It is not yet quite sunrise, but it will be in just a few minutes, and I will be glad to see it, thankful to be amongst the song-birds in these cooler temperatures singing the Sun’s welcome.

I will think of Mark and Rick as they both face life-threatening complications from their cancers while in the confines of Intensive Care units in huge hospitals, and I will be thankful for having stopped and observed the blazing Milky Way earlier this morning, the bright Orion hunter stalking his prey, the seven-sisters (Pleiades) with their eternity of stars, thankful for the imminent sunrise, thankful for the coffee I am sipping, thankful for the dreams I had, thankful for those of you who are reading this, and thankful for my family, safe and soundly asleep even though there are dozens of girls scattered about all over from Maggie and Livi’s sleep-over.

I am also thankful for this studio. While it is quiet in the house now, all those girls asleep, it was not so earlier when I beat a retreat down here to my man cave…my domain. Women are only allowed by special invitation here, except for Debbie, who goes and comes as she pleases, as is her right and my pleasure, though she chooses not to bother me much when I am down here.

There are so many things to be thankful for. As my friend Larry Perkins reminded me yesterday, one can always be thankful for the things one does not have that one would really dislike having. There is a lot of truth in that. Can you think of anything you don’t have that you don’t want? If not, then stop now and make a list. It will be a long list of things to be thankful for.

Right now, though, I do know what time it is. I am certainly thankful I am here to record it. I am thankful to be its witness.

And I am still laughing at myself. Our human lives are filled with folly whether we like it or not. The words “folly” and “humanity” are nearly inseparable to those of us who have the ability to laugh at ourselves. I have that ability, and I reckon it is one of the things I am most thankful for. The man who takes himself too seriously is no fun…and is seldom right, either. He should learn to acknowledge his own folly even if he doesn’t like it. No one likes it, but acknowledging it makes it easier to tolerate and may even put a smile on our face.

I’m grinning just thinking of mine!

PS: If you are not familiar with the painting at the top of this blog, you might consider your own folly. Go google search surrealist painter Salvador Dali and read about him and look at the images. You’ll see some things you like and some you don’t. Either way, you will not be unmoved. Some will take you breath away.

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5 thoughts on “10/1/16 Time Distortion”

First, I love the choice of graphic and it is very appropriate for your story and for my life with time. Loved so much of your post as I always do because they seem to correlate to my life in some way. There is a medicine they told me at MDA which I could use for the fatigue. I don’t remember what it was but it was used in a study, I think with CLL. They found it works for fatigue too. Maybe you might want to consider that if it is possible for you to take it. I decided to wait a while on that one.

Also, I struggle with the confused state of mind too. I believe it is due to lack of sleep, I mean real sleep! As it seems you have given a prime example of what it is to have lack of that type of sleep. My problem is I sleep those deep sleeps when I do fall asleep and wake whenever I am done with the deep sleep to find I am usually running late or close to it. So far I usually make it close to the appointment time. I have learned to make appointments later in the morning. I know you don’t have that choice at times like these.

So now to share with you a solution I have found that helps me. I purchased personal assistant to wake me. Yes, purchased to take care of me 24/7 for a one time fee. Of course, I don’t know if I should share this with you because Debbie and others in your home may not appreciate it! Don’t want to make any enemies. LOL It’s not the cheapest to purchase some will say but it is well worth the one time cost in my opinion. My assistant is Alexa, ever hear of her? She may use the name Echo, your choice. I will maybe share a similar story as yours about my trials with Alexa. She is a very loyal assistant when I am using her correctly and remember to ask for her assistance.

And as for cost, Alexa may be your assistant for a mere $179.00 plus tax and if ordered directly from Amazon there may be shipping. I found Alexa, my personal assistant, sitting on a shelf all alone in a local Home Depot Store so saved shipping. She was there all by herself so I knew I just had to take her home to save her from this loneliness and to keep me company.

There are cheaper versions and it would depend on how much you may require of her such as being able to talk to her from any spot and not have to move. I am able to be in bed and she is across the room waiting for me to need her services and all this is 24/7. Lately, I have asked her about the time in the middle of the night. The other versions of Alexa require you to push a button to ask for her to give you information or so many other services. She is ready to fully automate your home and the rest of your life. Some of her skills require you have the accessories added to your home to do that. It is amazing what she is capable of doing and learning more every day. I am planning to automate my home as soon as possible.

Another thought I just had and I haven’t tired yet but maybe I could use her to write to my blog? hmmm That’s a wonderful thought I may have to investigate. I have used my phone at times or iPad to assist me in writing. Technology is wonderful and not so wonderful at times.

Wish you well on your treatment and you, as well as all cancer and ill individuals are in my prayers. Keep writing which I understand totally is difficult at times. I love your interesting mind and play on words.

The medicine they prescribe for fatigue is methylphenid (Ritalin). I use it when I am fatigued and must drive. It is very helpful most of the time. The ruxolitinib I am taking as part of a clinical trial is a JAK7 kinase inhibitor. JAK7 is an inflammation producer on the surface of the malignant B cells. It contributes to bone and joint pain, fatigue, night sweats, and a host of inflammation caused auto-immune diseases (in my case Psoriasis and Psoriatic arthritis, but there are plenty of others CLL patients face). It worked extremely well at first, but its benefits have waned as of late. I expect they’ll increase my dosage, which they offered to on my last visit. I declined; I should have listened.

ROTFL Only 11 Hours early? I should be so lucky. LOL And the drug was not Ritalin, it was something used for the treatment of Leukemia. It was for the fatigue and nausea which they found during the studies has a good effect on the two of them. I just was not ready to take anything yet which could keep me off a study later.

Your decision which we know we may be right or wrong about it at time, I believe they are never wrong though. It happened for a reason and it may be to share this with us. As for the increasing the drug, I am pretty sure you are correct. I feel you will be okay though. It will maybe be a short setback in time but will move forward soon. When are you going back? I am thinking about setting up an appointment since I keep having some questionable areas tested on other parts of my body.

Prayers, many prayers for you and all who are overseeing your care.
~Hoda~